I originally saw my GP on the 5th of September because my left breast had turned red and swollen overnight. They arranged for me to attend a breast clinic 2 weeks later. I had the usual procedures and to my surprise I was told that I had fibrosis in that breast, but was diagnosed with an invasive breast tumor in the other one (right breast). On the 25th September I was told that they would operate 3 to 4 weeks later. I then received an outpatient’s appointment for the 6th of November, instead of the operation appointment I was expecting. On questioning this I was told that the consultant and his team thought it would be prudent to repeat the ultra sound and biopsy I’d had done on the left breast. Duly went along, but as the radiographer couldn’t see anything they decided not to do another biopsy, even though I told her that I had a stiff neck on that side.
The wait has been very nerve racking as I’ve had to wait until the 9th November (this week) to have surgery. I was told that the surgeon couldn’t operate any quicker because he was going on holiday. Has anyone else had a similar experience or had to wait so long for surgery.
In addition to the support and shared experiences you will soon have here, please feel free to call our helpline to talk your concerns over with one of our team, lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000
I am posting a link to the ‘Treatments’ page where you will find information and further support services from BCC which you may find helpful:
I originally went to my GP on 20th April this year (having waited a week to get an appointment despite saying it was for a breast lump). The GP put me on urgent referral which should have meant a maximum of two weeks but ended up being slightly longer at 9th May. I got my result of cancer on 17th May.
Surgery date (lumpectomy and SNB) was 12th June but a couple of days before it was changed to 14th June due to the list being too long. Had to get to the hospital for 7.30am for day surgery being nil by mouth from the night before. They couldn’t tell me what time I would be operated. Having waited in the busy day surgery all day not knowing when I would be called, I ended up going into theatre at 6pm! Was totally stressed and dehydrated by this point. I was home by 9pm but found I had post op urine retention and went back to A&E. Ended up on a catheter and they had to reoperate the next day due to haematoma so was in hospital for 3 days.
The surgeon gave me my lumpectomy results 3 weeks later and I had to wait a further two weeks to see the oncologist for the first time (18th June) - and that was after pushing to get an earlier appointment.
The waiting is horrible but cancer doesn’t spread overnight so try not to worry too much. It’s more the strain on the nerves that is the issue than a medical issue. I know I just wanted mine out once I knew it was there. The wait to find out if they results of the operation was excrutiating.
Thanks Nicola
It’s nice to know that I’m not the only one out there who’s experienced this. That sounds a bit naff, but hopefully you’ll understand what I mean. I’ve got this awful feeling that I too will have a frustrating day of delays as I’ve got to go to the breast centre first to have some sort of wire put into my boob at 9.30 and then have to get to the day surgery unit for 12.30. Not sure if the rules for morning surgery in terms of eating and drinking or afternoon surgery apply at the moment and as I’ve already been made to feel as if I’ve made a fuss, I’m loath to ask.
Hope all is going well with you
Sally x
Sally,
DO NOT think that asking questions is “making a fuss”. The doctors and nurses do this all the time and know the ins and outs, so it is easy for them to forget we don’t. They sometimes don’t think about (or don’t even understand) our concerns or our fears. Please keep asking. Do you have a Breast Care Nurse? Although mine is a tilty-heady sort, and NOT a kindred spirit, she was definitely a godsend when it came to finding things out. Even “do I take pajamas?” or “can my husband be with me?” I just couldn’t even begin to imagine what was going to happen. Ask, ask, ask. If you don’t know, you can’t be a useful participant in the process, and that is as important as the rest of it.
And yes, I had lots of delays at the start–it still sometimes freaks me out, and is almost my only complaint with the NHS, that they couldn’t just get my surgery scheduled. I think I was at the very edge of the six-week limit and only got that date when I called and cried on the phone.
Take care.
Oh dear Sally, I do empathise with you - delays are so worrying, when you’re already feeling anxious. When I was diagnosed with BC, the hospital kept cancelling my Op, because there was terrible snow in Sussex, and the hospital staff couldn’t get into work (and those that could were busy doing emergency operating on all the broken limbs). Eventually, the hospital phoned to say an army of volunteers with four wheel drive vehicles were taking staff to work, and that I should go immediately for a pre-operative assessment. The only problem was that my village was iced in, and I didn’t have a 4x4. Luckily, one of our neighbours did, and kindly drove me to the hospital, and waited while the assessment took place. A few days later the snow disappeared and the Op went ahead. The waiting seemed like an eternity, but in the greater scheme of things made very little difference.
Thanks Quail
I think it was more the fact that I questioned the reason that the radiographer hadn’t done the biopsy that the consultant had asked for and the fact that they had sent the outpatients letter before the letter explaining that they were revisting the left breast after declaring it all clear that made them feel that I might not think they were doing their best for me. Also I left a message for the breast care nurse and it took her a week to get back to me - so not so much support there. It was only by contacting this sites helpline that I’ve actually spoken to one of the nurses and go the support that I needed.
I’m not worried about asking questions it’s just that it gets wearing after a while and is just something else to think about. The only good thing to come out of the delay is the fact that I’ve read a couple of books and as a result have completely changed my diet in order to help my body fight back and that’s helped me remain positive.
By the way I love the two dogs
Take care
Sally x
Thanks lemongrove - although the river at the bottom of the garden appears to be taking over some of our garden - there’s no sign of snow so hopefully it shouldn’t delay things. It must have been dreadfull for you having to deal with that on top of all the worry about you op.
Take care,
Sally x
I’ve been waiting 7 weeks for treatment thus far which is very stressful. However, I have had lots of scans, tests etc, so they have been reasonably busy with me.